That's a strong word, but that's how I feel and can't think of another word to use to fit my emotions on the subject. I had to work today so I was only able to talk to Dr. Horslen over the phone... Even though the conversation could have gone a lot worse we are right back to the same subject that has scared us all. I have now gotten at least three or four sorries from Dr. Horslen because of all the bumps and problems that Dev has had to face since transplant. So once again he said sorry, this is the FARTHEST from the norm with bowel kids...

The bolus feeds are not working... ALL the different medications are not working... His bowel is not slowing down... EVERY doctor across the US that the team as gotten a hold of for second opinions is as lost as his team here... They have all tried and segjested everything they could think of. Dr. Horslen wants to do another contrast SC scan next week in BIG hopes of finding SOMETHING to fix and they will also do another scope just to make sure that his inflammatory bowel disease is still under control.

So the phone convo came down to "I'm sorry and all that's left to do is sit and wait and hope that the bowel starts working better as it grows"... God only knows how long that's going to take... Mean while we wait it out and worry about line infections, rejection, inflammatory bowel disease, CMV, EBV, septic shock, TPN, relisting, and heading right back to liver failure. The only things on our side right now is that they aren't stopping feeds to keep his bowel moving to help prolong liver failure and that his new liver seems to be handling everything VERY well!!! And SO many people are praying!!!

I thank the Lord EVERYDAY for this transplant because he didn't have much longer and it gave us more time together. It's bought us more time, more memories, more heartache, more uncertainties... I know that he is hear going through all this for a reason and I know that me and Luis are his parents for a reason and that he's touching peoples hearts in ways that nothing else ever could, but that doesn't make it any easier on us right now.

Because of my sweet Cheeks things have been set into motion to help other military families and make things right and better... And trust me I'm not stopping there.

                  

Elizabeth, Devin's mommy (10/02/06)
Born with intestinal atresia caused by fetal gastroschisis leaving him with short bowel syndrome and liver failure from TPN
Received Gifts of Life (08/07/07)
Intestinal, Liver, and Pancreas                    

http://www.caringbridge.org/visit/devintoledo

http://www.myspace.com/elisefj

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Comments:

LYNDELOU
Feb. 1, 2008 at 10:52 PM Voting popular and keeping your little one in my thought's and prayers...

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Zooke...
Feb. 1, 2008 at 10:57 PM Keep on fighting them...you are doing great for your family.  Dont give up hope.prayers are coming your way tonight!

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ashgr...
Feb. 2, 2008 at 5:36 AM I STILL PRAY FOR YOUR LITTLE DEVIN EVERY DAY IN HOPES THAT HE WILL GET BETTER,I HOPE THEY FIND A WAY TO MAKE EVERYTHING BETTER FOR HIM REAL SOON.I'M ALSO VERY SORRY THAT YOU HAVE TO BE AT WORK,AND CAN'T BE WITH HIM !!!

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cupca...
Feb. 2, 2008 at 8:24 AM

You adorable baby boy is in my thoughts and prayers. ( You and your hub are too)

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jeni1624
Feb. 4, 2008 at 5:23 AM

Continuing to send prayers to little Devin and your family.

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babyb...
Mar. 26, 2008 at 9:22 PM   I will put Devin in my prayers and you and your husband too and ask God for a healing  for him

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